Theme one: National Disability Strategy

Worse consultation exercise ever, not one trade union involved. We weren’t contacted, it didn’t feel like they made much of an effort with self-organised groups, the wider trade union movement, no consultations with GPs. Everyone I can imagine who should be consulted, wasn’t. GPs weren’t consulted but the reforms includes them. One thing I worry about is if you have multiple mental and physical health issues, you are unlikely to get adequate reports from general practitioners.”

The question is what are the government going to do now the strategy is unlawful, it feels like nothing has been planned. When the question has been asked, it has been ignore – it feels disrespectful. I hope they aren’t planning on just proceeding with the strategy. It would be typical of this government, doing to us, not with us.

A future Labour government needs to develop an accessible consultation document. Even the supporting documents of the current strategy were incredibility long and not very accessible. The whole current strategy consultation process just felt really inaccessible for disabled people and people who don’t speak English as a first language. A Labour government needs to ensure they are working with DPOs and grass root organisations and not just national organisations.

We wrote to all our local MPs in Gloucester who happen to be Conservatives when the strategy came out, we only received two responses. One was incredibly rude and another which was god and engaging. A key point we were eager to get across is the need to go back to co-design and co-production when running consultations – a lot of people just use these words but don’t actually do it. We really do need to go back to basics – it feels like we have massively gone back in time with all of this. It’s all lip service.

It is important that we have a clear plan from central government about what the steps are moving forward with the National Disability Strategy now that the consultation process has been deemed unlawful. A number of politicians have suggested that regardless it will be going ahead, which is incredibly disrespectful to disabled people and DPOs, and reinforces the long held feeling that policy is ‘done to’ disabled people rather than ‘done with’ them.

Theme two: DPO capacity and funding

I had an idea of a Labour government funding a buddying system for DPOs and encouraged to bid for funding.

We receive no money from local or central government which means we are extremely limited in the services we can provide. Despatie the fact we majority run by disabled people and support over a thousand disabled people a year, we still don’t get any support from authorities. We need that to change or we won’t as an organisation to see the next labour government, we simply won’t be able to keep going.

It’s difficult to get core funding and project funding is normally short term – this means we are having to let people go or hirer on short term contracts. It’s a shame because we train up people to effectively support people but then they are having to move on because the funding is so short term – I don’t blame them, they want more security and we just can’t provide it with the way current contracts are set up. Another issue for DPOs when it comes to funding is that we are not registered as charities and don’t plan to do so – we believe in rights, not charity. The way contracts and funding is set up doesn’t allow for that recognition, a lot of funding streams require charity status. One last issue I have is the support for disabled young people – a lot of authorities say they provide support for young people and that’s the end of it but support for young people and disabled young people is different and needs to be acknowledged.

A problem we are seeing more and more frequently when it comes to tendering and getting contracts to support disabled is DPO are being pitted against large charities and organisations. Even the contracts are being more tailored towards them with the requirements, including IT systems etc which is automatically excluding small DPOs. We are seeing home grown local organisations being undercut by national charities who aren’t doing as well – they don’t have the organic local links but they are able to write a good bid linked to overheads.

Local organisations who do apply for local grants and tenders from local authorities tend to find the amount assigned doesn’t include the access costs and other related costs linked to people’s disability – these costs can be considerable. So local organisations bids will look less competitive, but that’s because we ensure we are fully accessible. Local organisations and local links should be additionally scored when deciding who to offer the contract to.

We have a nightmare when it comes to engaging with local government. We applied for a contract and hoped they would give consideration to the fact we are a small DPO, they just didn’t. It was a massive loss. I think we need more alliance work and joined up working with DPOs to apply for contracts.

DPO are incredibly important, they just get it. They are led by disabled people with the lived experience so don’t work in a patronising way – it’s with us, not to us.

The majority of typical nation-wide DPOs are based in London or major cities that has meant that there is a sense that they don’t have a clear understanding of what is happening outside of London or have strong enough links to small DPOs in different localities. It is important for both the Government, Labour Party and larger DPOs to engage with grassroots organisations across the country to then feed into policy production.

The current national definition of a DPO is still what was deemed step 1 as outlined by the Disabled People’s Movement in the 1980s and 1990s, where the idea was that 51% of trustees were made up of disabled people. Moving forward we should be looking towards making that figure 100% (to include staff, trustees, voting membership). We would be looking for a future Labour government to revisit this in talks with grassroots organisations and redefine what qualifies as a DPO. Unfortunately, the 51% criteria has led to a lot of tokenistic social enterprise where there is potential for disabled people’s voices to get lost. If disabled people with lived experience do not have a seat at the ‘strategic table’, then it becomes too late to have their say in ensuring that delivered services are working for disabled people.

There is a problem surrounding DPOs and charities that carry out both service delivery and also policy campaigning and advocacy work but aren’t disabled people led. There is a need, inside DPOs, to have fully representative board and leadership structures but also disability positive recruitment processes. We need to look at how organisations can do a better job at employing disabled people.

There has also been the destruction of advocacy organisations that work well at local government level to help advocate for disabled people. We need to work to replace or strengthen those organisations and their links with local government authorities. There is a real opportunity to utilise local government to engage with disabled people, especially young disabled people, to develop a strategy around ensuring that the electoral cycle and systems are accessible to disabled people. We need to look for ways to improve accessibility to voting and election materials at local government level.

Recommendation for government to put forward a board, for example a Future Accessibility Impact Board, a group of disabled people and DPOs represented to analyse the future impact of certain policies and proposals on future generations of disabled people. This would include looking at up-skilling disabled people in certain policy areas such as climate change and taking more inclusive climate action working with disabled people.

DPOs want to be engaging directly with young disabled people in their schools and communities, drawing young disabled people into the Disabled People’s Movement to carry on in the future. In order to do this, it is important that DPOs are receiving sufficient funding to be able to work directly with them. DPOs need to be working on coproducing inclusive education, such as teaching across all levels of education the rights and needs of disabled people.

The core funding is not sustainable, nor does it enable DPOs to carry out what is being asked of them. Many DPOs are pushed to chase funding, meaning there is little stability within the organisation and the size and capacity of organisations will fluctuate based on access to funding. This also makes working for a DPO not a hugely attractive goal. Labour should look at the core funding for DPOs and the need for unrestricted funding, as DPOs can manage funding and developing new ideas of working and projects. If funding was unrestricted, DPOs could spend the money in a way that grassroots organisations understand the money is best spent.

DPOs are putting in a lot of work to get to the final stages of National Lottery funding, only to come away with nothing after all their hard work. We need to look into what the government can do to enable organisations like National Lottery to help DPOs. For example, looking at who is sitting on the awarding body at National Lottery to make sure disabled people are represented.

The government needs to acknowledge not only the financial aspects of DPOs (income and expenditure), but also the social value that DPOs bring to their communities, which is hugely significant. For the Labour Party, it is important for disabled people and DPOs to feel they are included in the forefront of Labour policy, and are demonstrating the strategic importance of disabled people. In recent decades, disabled people have been disproportionately affected by austerity, the COVID-19 Pandemic, and now the current cost of living crisis, and that needs to be made clear and also shown through Labour policies.

We need to get to a point when deaf and disabled people’s organisations are placed as key stakeholders in integrated care systems, with government ministers and the NHS alongside for example. I believe it should be mandated that DPOs are named stakeholders in these integrated care partnerships, where they are paid for their time and expertise rather than relying on short term grants as they do mostly now. Similarly, while DPOs need to be involved at a strategic level, there is often not enough support or funding for DPOs to carry out the work they are asked, or need to do, as they are not being given payment for their time and contributions.

Sometimes it feels as though the impact of these current crises on disabled people are intentionally masked by the government and instead other groups are named as being impacted for example children in poverty or old people. In reality, those old people dying from COVID, a huge percentage were disabled people, and disabled people living in poverty is a lot higher than child poverty rates. Disabled people are overlooked in these states by being placed in other groups such as age, sexuality etc. The Government and Labour need to make disabled people visible in these statistics to clearly show the experiences of disabled people across the country.

The Disability Confidence Scheme is not working at present and feel that best practice in employment is not adequate in the scheme. There needs to be some kind of feedback from a DPO on how it is working, but that should be earlier for example, working with employers rather than just disabled people, on how to be disability positive organisations.

There needs to be more reporting on disabled people in leadership roles as DPOs experience a ‘brain drain’ from the sector. With leadership programmes and proper resources, and disabled people in leadership roles, this could be easier to sustain in the long term. 

More reporting and accountability around working in coproduced partnerships. It should be built into for example, how committees will work in coproducing partnerships and how partnership boards would work. Build it into legislation and regulation that makes it hard to change and get rid of DPOs. This could include finding a way of reporting the added social value of DPOs, but organisations would need the necessary resources and funding to carry out this type of reporting and feedback as they are already overstretched in capacity.

DPOs work about SMART (specific, measurable, achievable, relevant and time-bound) and cost effective objectives and can prove they are impacting the lives of many disabled people. These factors should be considered in terms of funding or make a difference in terms of how you apply or are recognised to receive funding.